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Bleeding after ileostomy

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Ulcerative Colitis
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Posted 12/11/2016 10:58 AM (GMT 0)
So I had an ileostomy 5 weeks ago to remove large intestine, rectum/anus still intact. I'm finding that I'm still bleeding from the back, now I know this is not uncommon but I just wanted to know if this is left and not removed are there any complications. I know a lot of people leave it attached and have it removed later on but what happens to the rectum/anus or even the rest of the body where it's been attached if it continues to bleed?
I'm not seeing my surgeon until late January but just wanted to know if anyone had any thoughts!
Thanks.
Posted 12/12/2016 2:11 PM (GMT 0)
I'll answer this to the best of my ability, but you can always call your surgeon and ask on the ostomies forum on healingwell.

It is possible to still have active ulcerative colitis inflammation within the small portion of your rectum that remains after your colectomy surgery. So, you might still see mucus and blood as a consequence of that remaining inflammation and expel it multiple times per day.

Generally, you have two choices:

1.) You can keep the end-ileo when you are happy with it, and they'd do another surgery to remove the remaining rectum and close the opening up.

2.) The j-pouch is the other choice, which would enable you to sit on the toilet and have a bm. They make a pouch out of the end of your small intestine and attach it to the sphincter muscles. As UC is limited to the large intestine, there should be no further inflammation.

You can read up on articles regarding the procedure - There are also some good blogs out there that really helped get a handle on what the process is like -
Posted 12/12/2016 2:26 PM (GMT 0)
Thanks iPoop, I'll have a read through those links and posts. X
Posted 12/12/2016 3:49 PM (GMT 0)
Id imagine the majority of people with UC, who have surgery to remove their colon but leave their rectum, will continue to suffer with symptoms of various levels. I do not know what your plan is, but I had a 3 step surgery. Step 1 was colectomy. After step 1, I had some symptoms, they weren't terrible, but I know people who suffered really badly with proctitis after colectomy. Step 2 is to remove the rectum and construct the jpouch. At that time, you no longer have inflammation. The problem after step 2 is the loop ileostomy. It's not so easy to manage. Step 3 reconnects you and you no longer have the external pouch. At that time, I was free of symptoms and free of the ileo. It's a long road. 2 Step procedures are more common (step 1 and 2 happen at the same time), but depending on your health situation, you may or may not be a great candidate for 2 steps. The more steroids you're on, or you've taken, and the extent or your flare up, and length of time, can play into whether you a candidate for 2 step surgery. Some people opt for permanent ileo, but if they know they are doing that from day 1, they would usually remove the colon and rectum and close up the back.
Posted 12/12/2016 5:09 PM (GMT 0)
Thanks notsosicklygirl, I really wish they had just removed everything in one go. The thought of having surgery again just scares me.
I'm still not sure if I want a jpouch just because it's a lot of surgery to be had, I'll speak to my stoma nurse this week and see what she thinks about the ongoing bleeding.
Thanks. X
Posted 12/12/2016 6:07 PM (GMT 0)
There's pros and cons to an end-ileo, like you have now. If you are happy with your appliance and stoma, and it's relatively trouble-free than keeping it might make sense. There's a few regular posters here who kept theirs. There's not a lot of issues with an end-ileo, most are problems with leakage resulting in irritation to the stoma or surrounding skin, and some have body image worries about it. You can get blockages in rare occasions, so make sure to chew well.

The j-pouch does involve more surgeries, and will require an adjustment period during which frequency will be higher until things settle down. You will not have UC-like urgency at all, you can hold it for a half hour or more. Generally, you go about 4-6 times per day, it's quick and easy, and often done when you pee (how many times a day do you pee? Usually it's about that many). The bm intervals are spaced evenly throughout the day, and sometimes one nighttime wakeup as well. There's stellar outcomes, there's average outcomes, and there's a minority of bad outcomes. about half eventually get a few occasional outbreaks of pouchitis, which is treated with antibiotics. For a few, they become an ongoing concern that requires a maintenance medication. Pretty sucky, but still waay better than UC. On going pouchitis likely means the person had Crohn's disease and not really UC afterall. It's very rare, but some have had to have a reversal, where their j-pouch wasn't working out, and they end up reverting to a stoma like yours.
Posted 12/12/2016 11:58 PM (GMT 0)
When I had my first surgery (subtotal colectomy, leaving rectum and anus, plus end ileo), my surgeon said he would be happy for me to keep the disconnected rectum for three years - but after that, he would recommend either j-pouch surgery, or removing the rectum and making the ileostomy permanent.

In the end I had the ileo for 3.5 months, and then had j-pouch surgery. I also had some blood and mucus from my rectum after the first surgery. My surgeon didn't recommend treating it unless I was needing to expel the blood multiple times a day. At first, I needed to empty it once every two days, which became every three days. After a couple of weeks it was every four days or so, and it was only mucus (which is totally normal). Usually, UC in the disconnected rectum eventually calms down a lot when the rest of the colon has been removed.

I had a very straightforward experience of my ileostomy, and was genuinely happy with it. But I much prefer life with my j-pouch (which has also been a straightforward experience so far, 3 months in). Managing a stoma takes a lot of organisation - always making sure you have enough bags, barrier sprays, barrier rings, adhesive remover, dry wipes, keeping tabs on the changing size/shape of the stoma in the early days...

I found I emptied my bag about 10 times a day, as I didn't like it getting full under my clothes. With the j-pouch, everything is internal, I am not on any meds and apart from Sudocrem, I don't need any supplies. I empty it 4-5 times every 24 hours, have no urgency, and usually sleep through the night. It certainly seems less complicated, and much more 'normal' in terms of lifestyle. It did mean going through an extra surgery, but I'm glad I did. If I ever had to go back to an ileostomy, I know I would be fine and happy though. In my case, both options have been a million times better than UC.
Posted 12/13/2016 8:43 AM (GMT 0)
Thanks for sharing Albannach. Glad your happy with the jpouch, not sure if I'm going to go down that route yet still a little early for me to decide. X
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